Gathering reliable evidence based information takes time. In developing www.carerhelp.com.au we needed to identify and appraise existing online resources that focused on providing information to support Australian family carers of people with advanced disease, focusing specifically on the end of life.
Websites that provide information to carers of adults who have an advanced life limiting disease were appraised. The focus was on Australian websites, however some International websites were included. Information, videos, booklets or fact sheets, interactive educational modules or a page of links to other relevant organisations were considered.
The members of the projects National Reference Group initially identified websites. The Executive Committee then put forward other websites including key international organisations. Topics focused on location of care, dealing with emotions and difficult conversations, changing roles, relationships, and death and dying. A website quality assessment form was developed to review the 50 websites in a systematic way.
These were reviewed and scored based on:
- The relevance of the information
- How recent the information was
- Whether the content was evidence-based or from an organisation that had an evidence-based philosophy
Seventeen of the 50 websites were excluded: primarily because the information was patient specific or related to carers but in relation to survivorship. In total, 33 websites were critiqued using the above criteria. The key findings suggest that:
- There is a lot of information across a variety of websites; however, the difficulty for carers is finding the information in one place.
- There is a lack of information on choosing site of care (home, hospital, aged care facility) on disease specific websites however; it is discussed well by the palliative care sites.
- Coping with emotions and difficult conversations is not frequently covered. Similarly, changing roles (from partner to carer) is not frequently covered by disease specific sites.
- There is a general lack of information specific to CALD populations, LGBTIQ populations or ATSI populations.
- Available videos are of varying quality and content.
- While death and dying is covered by many sites (generic and disease-specific), the information provided is more of an overview rather than detailed information.
The process showed that there was a need for a generic online resource for carers of people with advanced disease, particularly if they are not linked into palliative care. It highlighted the need to focus on high quality information with links to other sites (where appropriate), and a focus on location of care, dealing with emotions and difficult conversations, changing roles and relationships and death and dying. The lack of detailed information on death and dying highlighted a specific gap in current online resources.
This scoping study showed that there is good quality palliative care information on palliative care and cancer websites, which meets many of the needs of carers of people living with advanced disease. For those who are caring for someone with an advanced non-malignant condition, there is less content available to assist them with their caring role and preparation for death and dying. The scoping study showed that content around the benefits of palliative care to carers of people living with an advanced disease, how to access palliative care, and preparedness for death and dying was needed. Many people will die without specialist palliative care services, and therefore sharing expertise about death and dying to disease specific organisations would be a way of reaching a different audience.
www.carerhelp.com.au is now available for family carers to use and we encourage anyone who has used the website to participate in the online evaluation (available on the website) to help us continue to improve the website.
We would like to acknowledge the Commonwealth Department of Health for funding this project and thank our partners, Flinders University, University of Technology Sydney and Carers Australia.
Di Saward, Research Nurse and Project Officer at the Centre for Palliative Care, St Vincent’s Hospital Melbourne